posted
I have been treating Lyme, Mycoplasma Pneumoniae, Chlaymidia Pneumomiae, possible Bartonella for years now, but probably not as aggressively as I should have. Did Doxy and Zithromax for 2 yrs, then added Rifampin in 4 months ago at 300mgs and dropped Doxy. So just Rifampin, Zith and garlic for the last 4 months.
Most lyme symptoms are gone now (I had a list of at least 40-50 symptoms) but I suddenly have two very strange symptoms.
- Squeezing head pain (like an artery being squeezed) spasms that come on while walking upstairs or lifting something heavy, accompanied by mild disorientation, flushing and some sweating, shakiness.
DId an MRA/MRI with contrast which showed no aneurysm, vasculitis or abnormalities.
Did a stress test (have done many over the years) which showed no symptoms at 98% of maximum heart rate (177 bpm) for 18 mins uphill incline. BP response was normal. In other words, symptoms were not reproduced on the treadmill. However, I had them today while walking and while lifting a box. Very strange, they seem to come and go.
- Second symptom I get is irregular heart beats and premature ventricular contractions when I swallow, turn my head, breath in, move my neck, lay down or press my back against my chair. This seems to be vagal related. I do have a small hiatal hernia.
I have a history if PVC's, PAC's, and PSVT but that usually comes and goes (especially if herxing). This is more like something inflamed in the vagal nerve area, or spine.
Not sure if the two are related, but the pain in the head could also be vagal since it seems to be related to heavy lifting or stairs.
My LLMD's assistant called me today and seemed stumped. They might pull me off the meds. Really don't want to go backwards at this point, but don't want to have an aneurysm either.
I scheduled an appointment with a neurologist Friday, but doubt he will have much insight. Also have an appointment with a cardiac electrophysiologist Thurs. Maybe a tilt table will show this?
Honestly I am tired of this disease and at the end of my rope. Have had so many tests, so many injections with dyes, nuclear imaging, will probably be dead of that before they find an answer.
Any input would be appreciated!
Thanks!
Posts: 770 | From USA | Registered: Jul 2006
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WildCondor
Unregistered
posted
I would totally get a Tilt Table test and make sure it is done right, and part 2 of the test is administered. That positional stuff along with hernia is probably the vagus nerve indeed.
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posted
I thought SPECT tests were the way to go as they show blood flow abnormalites.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Sounds to me like lyme viral or bacterial encephalitis.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Encephalitis would be a constant headache. I don't have one. Head pain is more like a spasm that comes and goes. Sometimes with exertion and sometimes not. Just had one actually. Almost electrical, like someone driving a spike into my temple. But then there are also the squeezing pains that last about 2-4 seconds.
LLMD thinks it's the bart acting up and wants me to UP the meds. Also wants me to take Niacin.
Posts: 770 | From USA | Registered: Jul 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I had some head symtoms very similar when I first got sick...never found out the cause and they went away after a bad 'reaction' to zmax. I was having on and off dizziness too.
My head would feel like it was going to explode when riding and elevator too.
I think a Spect scan might reveal more. I think a neuro consult is also a good idea.
Sorry I couldnt offer more help.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I would get off the rifampin now and add in say minocin winters coming less light to worry about
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Those symptoms don't seem too strange to me. They sound pretty typical of lyme and co.
My 5 year old is on 300 mg of rifampin and has taken it for 6 months - still has bart b/c when we took him off for 3 weeks, the symptoms came right back. Dr. J said he normally treats bart for 6 to 12 months. So, you might consider doubling your dose of rifampin. Did you see some improvement on it at the low dose?
Another possibility is that you could have babs. It is very common for people to have it as a coinfection.
One combo that would treat lyme, babs and bart would be zith, Mepron and bactrim. Just a thought.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
Yes, I thought of Babs too. My LLMD suspects it and is giving me herbs to take for it along with the Rifampin, Zith.
He wants me to increase the dose which I will do this week.
The head pain with exertion does scare me. Never had that one. Had head pain spasms that came and went as a first symptom but they were not exacerbated by exertion. Anyway, tests so far are normal.
Thanks for your replies!
Posts: 770 | From USA | Registered: Jul 2006
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posted
I can relate to the heart symptoms. Sometimes if I bend down to tie my shoe I will get them or if I breathe in too deeply. Sometimes it happens when I eat. It drives you crazy because you don't know what you can do or can't do anymore.
My cardiologist just stares at me when I tell him these symptoms and is clueless.
Posts: 425 | From NY, United States | Registered: Mar 2005
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posted
There are towers in every major city these days. You would have to live in a cave in the antarctic to get away from them.
I was EMF sensitive BEFORE I began taking antibiotics, but not now. If you have not treated yourself I highly recommend taking the drugs as it really enabled me to work online again. Before I could not handle more than 10 mins at most. Now all day is fine.
Posts: 770 | From USA | Registered: Jul 2006
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seekhelp
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Member # 15067
posted
There's no EMF here as you said Myco in Antarctica Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The symptom sounds just like mine. Only when i exhert if i do not sit down or lay down i feel like im going to pass out.
I am low on vit d and wondering if this might be some of it. But its also a lyme thing to.
In fact this has been my worst symptom along with fatigue and muscle weakness.
It does go away in time when your completely better. I was better for 6 years just relapsed. When i was better i only had it if i was very tired and had pushed to much.
As of late however its been constant. Starts in shoulders for me then goes to the brain.
Terry
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
Interesting Terry, thanks. My LLMD suggested maybe trying Diamox to see if it is related to intracranial pressure. Not on Doxy, so not sure what would cause this other than the lyme.
Posts: 770 | From USA | Registered: Jul 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sounds a little like a migraine seizure which can be triggered by hyponatremia (low sodium).
ALL the anti-seizure meds (many impact Na channels/recpetors) cause hyperglycemia and depakote (for one) -> "fatty liver".
GREATLY simplified...excess sugar -> excess stored and -> fat. Too little sugar -> fats utilized (better).
Our brain needs a HUGE amt. of glucose daily, but IT can use ketones instead.
"Your doctor will not prescribe Diamox for you if your sodium or potassium levels are low, or if you have kidney or liver disease, including cirrhosis."
Your serum Na and K levels are okay and kidney and liver functions?
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Glucose high at 112 (after eating but it has tested around 100-112 every blood test. I was not fasting).
Creatinine 0.96 eGFR normal Bun/Creatinine 14 Sodium 140 Potassium 4.1 Chloride 101 Carbon D 29 Calcium 9.3 AST 27 ALT 24
Posts: 770 | From USA | Registered: Jul 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Myco, I was just posting earlier this week about my own issues with an "electric headache". I determined it was caused by bart. I have vagus nerve irritation associated with bart, as well.
I am currently on rifampin, 600 mg daily, and when I first started it I got bad chest pains. I notice that my heart seems to "skip" a lot when bart symptoms are flaring.
I plan to ask my LLMD to switch me to levaquin when I talk to him next week. Though rifampin brings some relief, I don't believe it is getting rid of the infection for me.
It is so hard to distinguish between the diseases - what disease causes what! But I'm pretty sure my "electric storm" headaches are a bart symptom.
Good luck! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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I think you are right. Zapping, squeezing pains in my head were my first symptom (along with irregular heartbeats) in the mid 90's. My LLMD thinks the Rifampin is bringing those symptoms to the surface. There is a certain amount of restructuring that goes on as you heal. If you go to the Cpnhelp.org website you will see before and after pics of MS patients on Doxy, Zith, Flagyl and Rifampin. Fairly amazing as their glands and faces change with treatment, along with hair coming back, spinal changes, muscles becoming smooth and supple again, stomachs tightening with no exercise. Really amazing stuff.
You might want to stick with the Rifampin as tests have proven it to be very effective with Bart and Mycoplasma, even more so than the quinolones. You can add in pulsed factive which alot of LLMD's are doing.
Be well!
Posts: 770 | From USA | Registered: Jul 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I didnt read all of the replies,,,just KNOW what happens to ME when I am away from my Calcium, Magnesium and now kelp sups.
It indeed treats me the very same way with stabbing electrical pulses and smashing 15 second headaches.
IF indeed thats YOUR probs,,,how cheap and easy can it get to get to feeling better. I even got more pep from the kelp also!!!
I actually feel tons better on those than off them,,,no kidding,,,difference of night and day "for me"
try it,,,you might like it!! Takes about a month to get things kicked in when you start taking them,,,kelp a couple days and you KNOW,,
,if it helps,take it,if it doesnt try something else
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Myco~ I've had the squeezing head pains for my entire illness. Also feels like balloons are being blown up and released inside my brain. Lots of bizarre headaches, head pressures for me....
I do not have flushing, shaking or sweating...
I do have tachycardia and a "jumpy" heart. I think this is due to my infections, to some extent a magnesium deficiency, and maybe to some extent because some people have that. My cardiologist checks me out thoroughly once a year, and he does a pretty good job of stifling his laughter when I whine to him about my heart.
I'm currently battling Cpn, enterovirus and HSV1. My hope is that when those are knocked down that those symptoms will improve.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
i get the squeezing in my head and in my muscles..worse with barrometric pressure changes and hormone changes.
Posts: 94 | From ut | Registered: Jul 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
Fatty liver (as a result of hyperglycemia) is ONLY dx'd via a ***liver ultrasound.***
I know because my son...
Your blood levels (with the slight exception of glucose) look pretty good!
Are you a vegetarian by chance? A protein deficiency is linked to headaches, etc. Do you feel you are losing muscle strength/mass?
Vegetarians also have to watch for deficiencies in EPA (critical, IMO, in lyme) and DHA. More EPA to DHA ratio + a little vitamin E is helpful. EPA and DHA work differently!
Protein S deficiency? How is your blood clotting time i.e., is your blood "thick"?
Prothrombin time (PT)?
Both pro and con re: the good/bad of having "thick blood" (we used to think it was only bad)
posted
Just came back from a very good Neuro appointment.
I was shocked that he was so compassionate when I told him I had late stage Lyme. Apparently his wife was recently diagnosed and luckily they got it in time. He was a very smart neuro who really time the time to hear me out.
My new MRI/MRA shows no real white matter changes compared to the one that did in 02'. That one showed possible vasculitis and demyelination. He was very interested to see that the brain had healed.
He is concerned that I am having a transient increase of spinal pressure because of altered CSF dynamic from Lyme and is recommending I see a neuro surgeon who may be able to diagnose it. If this is found (tough because the pain/disorientation in my head with exertion/valsalva) comes and goes) would probably have to drain some fluid to relieve some of the pressure. Sounds scary but this could be a problem if not dealt with.
Posts: 770 | From USA | Registered: Jul 2006
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LLMD checked clotting times along with Fibrin, Ferritin (always on the low side) and the usual for thick blood. All in the normal (middle) range. I do have mild ITP (Platelets in the 120-130,000 range).
Not a vegetarian. Will add some E as I think I need it.
Neuro today suggested migraine caused by Lyme (I get inflammatory symptoms if I lay out in the sun all day) and also tension headache and TMJ but did not get excited about those ideas because mine are exacerbated by exertion/valsalva which points more towards increased intracranial pressure.
I am not on Doxy or Mino, so I think it's caused by my disease or herx.
Hope I will not need a spinal tap to decrease pressure but will have the neuro consult to rule that out next week.
Thanks for your input!
Posts: 770 | From USA | Registered: Jul 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
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posted
Good luck to you, Myco. I'm glad you have a compassionate neurologist by your side.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Thanks. I will be seeing the neurosurgeon this week. Hopefully I will not need fluid drained with a spinal tap.
This is not constant head pain, but spasms with exertion (though not always) accompanied by disorientation and shakiness/mild sweating. Very bizarre.
Posts: 770 | From USA | Registered: Jul 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Myco, did you have Lyme and babesia, etc and treat that at some point? I know you have been focused on myco but were you were ever diagnosed/treated for those?
I am wondering if those weirdo symptoms could be something else trying to rear its head.
How did you know to focus on MP and CPN?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I treated Lyme, Cpn, and Myco with 3 years of Zith, doxy (low dose). Not high enough doses to get chronic lyme. Since I had alot of panic attacks my LLMD decided to go for the Bartonella first, which I am doing now (month 4). I am thinking of adding in high dose Amoxy to my Rifampin and Zithromax to get the Lyme, then get into some Crypto for Babs until I can get off the Rifampin and Start Babs drugs like Malarone.
I also seem to be getting some head pressure whenever I sneak a bad food like cheese. This makes me think yeast, so I have added 4 caps of Zhang garlic daily which immediately cleared my tongue.
It may be the Lyme or Babs popping up and I will talk to my LLMD this week about it.
However, I have never had squeezing head pain specifically with exertion that comes and goes, that is a very strange symptom. And these irregular beats with swallowing is very vagal. Something is really coming to the surface.
Posts: 770 | From USA | Registered: Jul 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Myco~ Just so you know...panic attacks can also be caused by viruses. Brita (who used to post on the HHV-6 forum, and is a good friend of mine) had lots of panic attacks and depression. Those are largely gone after treating HHV-6, EBV and enterovirus with valcyte, then valtrex, then oxymatrine.
Good luck figuring out the head pain. Regarding the spinal tap to drain spinal fluid to relieve pressure....I'd ask about the amount of time that lasts....My understanding is that spinal fluid gets replaced...so not sure that draining it will provide any lasting benefit. You might want to ask that question.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Thanks. I know Bartonella causes anxiety/panic and so does Lyme. I am positive for both. My panic/anxiety is largely diminished after starting Rifampin. Astonishing really how clear my head is now.
Since I had numbness on right side of face, light sensitivity, night sweats, GI problems etc...when I first got sick it is a fairly straightforward Lyme presentation.
Will get tested for all the viruses and talk with my LLMD about antivirals.
Re: spinal tap. Thanks for bringing that up. I will discuss with neuro surgeon this week. I think I would try Diamox before I resort to a spinal tap to release pressure if this is the problem. SInce it is transient it is very difficult to tell what is happening.
Best to you!
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